hen Chinese scientist He Jiankui announced the birth of the world’s first gene-edited babies, it shoved one of the most promising new medical tools into the public eye.
Jiankui used CRISPR gene-editing technology to modify embryonic genes of twin girls to make them resistant to HIV. Clearly, the reaction from the scientific community has been overwhelmingly negative, with critics questioning the ethics behind the trial and calling for a moratorium on similar research. But what does the public think about this technology and its implications? Do they see it as safe? And how would they like to see it used?
The development of in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) brought with them a range of concerns regarding potential misuses. A decade ago, a study published in Nature asked whether parents would use the power to choose desired traits for their babies, while another paper argued that PGD is a form of “neo-eugenics”. Although fairly neutral in tone, the paper introduced a term which exhibits an obvious connotation with cruel eugenics practices of the 20th century.
Concerns have also been raised suggesting reproductive gene editing “imperils universal human rights”. Trying to understand this claim is actually rather difficult, since the goal was always to ensure the birth of a healthy child.
In the meantime, devastating diseases such as Tay-Sachs, Huntington’s and Duchenne muscular dystrophy have no cure and cost millions of dollars in treatments. The emotional, physical and financial burdens can make these diseases essentially unmanageable. The development of promising technologies, including CRISPR gene editing, seems to offer hope for better treatments or even cures.
That media problem
Often, we see mainstream media coverage adopting sceptical positions towards transformative technologies. Consider that the introduction of IVF was accompanied by eerily similar headlines. Fortunately, despite being framed that way, the technique obtained a green light and helped a lot of people.
But will this be the case with gene editing in the era that demands absolute consensus?
Public debates about altering the human genome have been going on for a while. The growing use of CRISPR has merely intensified them. Pew Research Center published the results of their latest survey in July, revealing that most Americans have concerns about the implications of gene editing.
But if we look closely at the graphic, it’s actually not so bleak. By comparing “very likely” numbers in negative expectations and “fairly likely” in positive expectations, we see a glimmer of hope: While 58 percent of Americans think it’s very likely that inequality will increase, 48 percent believe with a degree of certainty that it will pave the way for new medical advances and help people live longer and better-quality lives. While the “fairly likely” option is an expression of a cautious optimism rather than a radical certainty, it should be considered just as valid because the question being discussed is currently under development.
Inaccurate assessment of risks
Looking at the estimates the Pew Research study provides, we can see a reflection of the narrative most widely used in the coverage of gene editing by the media. Specifically, rising inequality issues and limited access for some populations. This narrative has been repeated so many times it has become a default starting point for discussing the implications of this technology. Incidentally, it ticks off three of the most powerful emotions that researchers identified when it comes to creating negative bias in processing information: dread, fear and outrage.
That’s where we find one of the biggest challenges for science communicators. The general public is not always familiar with specific terminology and often lacks sufficient information needed to understand proposed scenarios. It makes it easier for those people to be influenced negatively by outside sources. Therefore, subjective perception takes center stage in forming opinions that will shape our future health policy and wellbeing of our children.
In his interview with Freakonomics in 2011 Peter Sandman, author of “Responding to Community Outrage: Strategies for Effective Risk Communication” described a hypothetical situation in which factory executives present accurate data to the public to prove their factory’s emissions don’t cause leukemia. At the end of the day however, “You’re still the factory that they wish wasn’t in their neighbourhood. And all the sources of outrage are still there, and when you correct the hazard perception, the outrage doesn’t go down… It may in fact go up”.
Applying risk perception theory to germline editing shows that the technology hits many of the marks that Sandman says could determine the level of acceptance by the public. Among them:
- Hard to understand
- Affecting children / future generations
- Being controlled by “the system”
- Morally and/or ethically objectionable
- Operating by a closed process
- Having more media attention
As we can see, each of those points can be easily transformed according to context and used in swaying public perception against gene editing. Positive narratives, on the other hand, don’t provide a message powerful enough to counter an enormous level of emotion generated by the outrage factors.
As a result, genome editing (borrowing from Sandman’s example above) could simply be a factory a lot of people don’t want to see built. Whatever the benefits, in the eyes of many it just doesn’t feel right.
And while the arguments about the evils of restricted access and inequality remain prominent in the debate, they seem illogical when considered from a historical perspective. Would anyone argue that penicillin or the polio vaccine should have been halted because they couldn’t be instantly accessible to everybody on the planet? Introducing widespread access to a new technology is a gradual process. It can’t happen overnight.
Anna Everette is a freelance writer with a keen interest in genomics and biotechnology. Follow her on Twitter @annaeverette16